Baruch HaShem, We are going home.  The cautious approach seems to be working.  She spent the night in the er and is on high doses of antibiotics and steroids. She is already improving and will continue treatment at home.

Emergency Room

Avigayil got a high fever today. She was also having trouble breathing. Her pulmonalogist came by and said her lungs didn't sound very good and sent us off to the emergency room. It looks like pneumonia.  The problem is that she is not yet back to her baseline.  If it is pneumonia the hospital will want to treat it aggressively to ensure that she doesn't become critical.  We are in the ER now waiting for results. Please keep her in your prayers.

The Empire State Building Lights Up for Preemies

All over the world last night buildings were light up purple to raise awareness for preemies.

World Prematurity Day

Before Avigayil was born, I knew very little about prematurity. The truth of the matter is that 50 years ago, Avigayil would not have survived, 5 years ago she would have been confined to a care facility. It is because the parents of preemies before me worked so hard to raise awareness and funds for research that my daughter is not only alive but at home with us. Please take a moment today to think about and to daven for Avigayil and for all babies born too soon. Today is World Prematurity Day. 

Prematurity - The Basic Facts

Defined as birth before 37 weeks, prematurity is more common than most people think. In Israel, 8% of babies are born premature. In the US the number is higher at 12%, one of the highest in the western world.

The age of viability is generally considered to be 22-23 weeks gestational age. Before this a baby cannot survive outside of the womb. There are varying degrees of prematurity that can (usually) predict the course of a child's NICU stay and the complication the child could face. (Avigayil was an exception to these guidelines.)

Babies born before 28 weeks are called extremely premature or micro preemies.
Babies born between 28 - 32 weeks are considered very premature.
Babies born between 32-34 weeks are moderately premature
Babies born at 34-37 weeks are considered late preterm.


Prematurity and its complications is the #1 cause of death in infants world wide. According to WHO more the 1.1 million children die every year due to prematurity. Sadly more then 75% of those deaths could have been prevented.

For more information please check out WHO's wesite as well as March of Dimes.
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November

November is Prematurity Awareness month. In the United States 12% or 1 in 9 babies are born premature. In Israel the number is lower at 9% of births. World wide, premature birth claims 1 life ever 30 seconds. I knew very little about premature birth before Avigayil was born. However, the truth is that prematurity can effect anyone at any time. While there are risk factors that make premature birth more likely, there is no genetic nor any causal link to any predictive factors. Anyone can have a premature baby. Because of this I would like to share some facts and information about premature birth over the coming weeks with you.





I have added 3 new pages. You can check them out on the tabs above. Two pages are things that I have found touching, inspirational, or connected with over the last year and a half. The other page is a round up of some great preemie products.

Homeward Bound

Avigayil has been officially discharged. She has quite a ways to go but the doctors will monitor her from home. (They really want her out of the hospital before she catches anything else and since Avigayil is on home hospitalization the doctors will be coming to the house) Her total weight loss is 700 grams. She is still on a continuous feed of only 30 cc per hour and off oral feeding all together (an overall total of much less then her regular intake). She needs to finish weening off the steroids and is still on an increased number of inhalations.  She will need a lot of follow up, a lot of therapy, and a lot of rest over the coming weeks. The doctors expect her full recovery to take months.

The kids are looking forward to having her home (they said good night to her every night on the phone) and to having me home as well. Avigayil will be very happy to be back in her own crib and is looking forward to not being poked, stuck and examined all day. I am looking forward to a long hot shower and a regular bed. I am sure Dov is really looking forward to getting back to a regular routine .  We are all looking forward to a quiet Shabbos.

Thank you to everyone who has been helping in so many different ways. There have been meal, babysitting, rides, visitors, and many other countless cheseds done for our family.  We are truly thankful for it all.

I am sorry to say that Avigayil will not be allowed any visitors for a while. Unfortunately, she is still weak and can easily get sicker. Also (and here is the really great part), she can easily get RSV again. Yep, our experience of the last two and a half weeks does not exempt her from the virus in the future.  It doesn't even guarantee that she will not get it again this winter.  We were very careful about isolation last winter and will be again this winter, but for the next few weeks until she regains her strength we have to be even stricter. Please don't take it personally if we don't invite you in, we just aren't eager to do this again.

Most of all, thank you to everyone who has been davening. Your support has been priceless and we have drawn strength from it. Avigayil still needs teffilos so please keep her in your prayers and thoughts.

Amazing Progress!!

Avigayil has been making some amazing progress. She was moved back to the pediatric ward and they are working hard to get her home as soon as possible (she has been in the hospital for a week and a half now). Her breathing has really improved and she is close to her baseline. She is back on her breathing machine and slowly increasing her food intake. She is also off a lot of the medication and weening off the steroids.

Unfortunately, she has dropped half a kilo in weight. This will also set her breathing back. She will need to be on her machine 24/7 for a while. We don't know yet if there will be setbacks in her physical development or feeding therapy but it is possible so we are prepared for that.

All in all we are moving in the right direction and much faster than anticipated, baruch HaShem.

Bring It On!

Apparently, Avigayil decided that she has had enough. She waited until I was out eating lunch and then nurse was with a different patient and then pulled out the new feeding tube and her vapotherm cannula. She then threw them both over the side of the crib!

Rather than try to put the tube in place again they are going to try to feed her with her regular feeding tube. We are hoping that she will not aspirate. If so we are back to trying to place a new tube.

Last Night

Avigayil did well last night. The food seems to be helping, she is slowly, slowly improving.  If she continues to improve then in another day or two we will move to a step down unit.

Food For Avigayil

Baruch HaShem, they were finally able to place the nasal gastric jejunum tube (ngj tube). It took 24 hours and several attempts.  Very, very slowly through out the night they will now try to feed Avigayil.  If this works she will use the ngj tube for a few days until she is breathing better and then try to slowly transition back to her regular feeding tube. Our hope is that getting some food into her will help improve her overall condition.  She has had nothing but iv fluids for a week now.

Update

They tried to feed Avigayil again yesterday through her gtube.  Again she aspirated to her lung and had trouble breathing.  She has been off of food for a week now and she is not happy about it. They are trying to place a tube directly into her jejunum (its a part of you intestines , I am not making that up) to get some nutrition into her. The last several attempts did not work.  They will try again today.

Her lungs where collapsed but are now hyperinflated  (the other extreme and just as difficult to breathe). However, this morning she seems to be breathing a bit easier.

Please continue to daven for Avigayil.

Intensive Care

Avigayil showed some improvement Friday night.  However by Shabbos day she started having episodes where she stops breathing. This happened a few times and she started again with minimal or no help. Then she had a very scary incident today. She needed to be resuscitated. The doctors worked on her for 3 full minutes. She has now been admitted to intensive care. Please continue to daven for Avigayil bas Rivka Batya.